Tara's Story

Tara's Story

My name is Tara, and I am a 32-year-old brain cancer patient. In August of 2010, when I was just 30, I was experiencing odd episodes where it would feel like a hot liquid was running through my chest, I would smell a strong chemical smell high in my nostrils, and I would stop in my tracks while experiencing a ‘deja vu’ experience.

All of these things occurred simultaneously and out of the blue. It would happen once and then not again for a day or two. This went on for a week until it started happening several times a day for about 4 days straight. At this point, I started getting worried and didn’t consider it “just a fluke” anymore, so I went to prompt care that Friday evening. I tried explaining what I was experiencing to the doctor, but I was failing miserably. He told me that he couldn’t figure anything out with the symptoms I was having and sent me on my way. I left feeling like I was crazy, frustrated, and like it was all in my head. Little did I know, it was. I headed to my family doctor that Monday, and he said he believed that what I was experiencing was neurological, so he sent me for an EEG and a CT scan. The tests were both on the same day, and the results came back around the same time. The verdict: these episodes were actually seizures brought on by a mass in my right temporal lobe.

The CT Scan wasn’t definitive, so I had to go for an MRI, which didn’t provide any further help. What I did know was that I had a brain tumour but I didn’t know whether it was benign or malignant. I had a wonderful neurosurgeon who decided to biopsy the tumour after my surgery, so as to not have to disturb my head more than once. Everything happened so quickly. I saw my family doctor for the first time on Aug 28, 2010, presenting with the symptoms I was having, and by October 21, 2010, I was in surgery to have my brain tumour removed.

The following 6-8 weeks are really kind of a blur as I would meet with my neurosurgeon a few times, and on the last time he said he would hand me over to the cancer centre. Cancer centre? What? This meant it was malignant, right? And they didn’t get it all? So I had my head cracked open for no reason? I walked in to the cancer centre for my first appointment and the staff and volunteers were wonderful, they went out of their way to see if they could put me at ease.

I met with my Oncology team and was informed that some tumour had remained, as they couldn’t get it all without possibly affecting brain function further. They had gotten most of the tumour, and the dreaded word: It was malignant. My brain tumour was a grade 2 mixed glioma tumour and from what I was told it was a slow growing tumour. In fact, I was told that the size of the tumour, 4.5mm x 3.4mm, or the size of a golf ball, had been growing for approximately 10+ years and I had only a few months previous started experiencing any symptoms from it.

We discussed treatment options, and I was tested to see if I was compatible with a chemotherapy pill, but unfortunately I was not. After speaking with my team, we decided, based on research, my overall health and the fact that most of the tumour had been extracted, that for now I would forgo chemotherapy and radiation. As explained to me, the life-long effects of chemotherapy and radiation far outweighed the immediate benefits to my specific case, and so I decided to go with Observation as my treatment.

For the first year, I needed to have MRI’s every 4 months with a subsequent follow-up with my Oncologist for the results. The second year (which I am currently in) has moved to an MRI every 6 months, and once this is done I should be moving to 1 MRI a year until I’m old and gray. Should I feel something is wrong, out of place, or experience anything, I can get in for an earlier MRI, as this is my treatment option. It’s important to remind myself that I still am a brain cancer patient, as I still have tumour in my head, but because I’m not feeling the day-to-day effects of something like chemo or radiation, or because I still have my hair, I sometimes forget.

That isn’t to say that I don’t have “my days”, because I do. In fact I am unable to work right now due to the fact that there are days I lay in bed with the worst pressure headache imaginable that happens right along my incision line. I lost my peripheral vision in my left eye due to the tumour extraction during surgery, my balance is off and I’ve fallen quite a number of times as well, and on days that my balance is horrible I will walk with the cane that I got post-surgery.

My short-term memory isn’t good at all, and I often have to ask people to repeat themselves even if I just asked them a question, not to mention the days when I get disoriented and have to stop and think of where I am or how I need to get where I’m going. It isn’t fun, but it is the “new normal,” and it’s something that I must adapt to.

Every time I walk into the cancer centre, I am quickly reminded of how much worse it really could have been and can be. I thank God for my determination, my family & friends and of course the wonderful doctors and specialists that I have encountered along the way. Even though I was thrown into this journey that I wish I hadn’t, I will try my hardest to make it the best one possible.
 

Tara is from St Catherine's Ontario

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